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1.
BMJ Glob Health ; 9(6)2024 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-38950913

RESUMO

BACKGROUND: The COVID-19 pandemic resulted in extreme strain on health systems including the health workforce, essential health services and vaccination coverage. We examined disruptions to immunisation and maternal and child health (MCH) services, concerns of personal well-being and delivery of healthcare during the pandemic as well as factors associated with self-reported trauma or burnout among healthcare providers (HCPs). METHODS: In March-April 2022, we conducted a cross-sectional survey among HCPs in two provinces of Indonesia. HCPs involved in COVID-19 or routine immunisation and MCH services were randomly selected from district/city health office registration lists. We descriptively analysed service disruptions experienced by HCPs as well as trauma, burnout and concerns of personal well-being and delivery of healthcare during the pandemic. Multivariate logistic regression analyses were undertaken to identify factors associated with trauma or burnout. RESULTS: We recruited 604 HCPs. Mobilisation of staff from routine health services to COVID-19 response duties was a key reason for service disruptions (87.9%). Strategies such as community outreach and task shifting were implemented to overcome disruptions. Trauma or burnout during the pandemic was reported by 64.1% HCPs, with 23.5% reporting worse mental or emotional health.Factors associated with trauma or burnout included delivery of COVID-19 immunisation (adjusted OR (aOR) 2.54, 95% CI 1.08 to 5.94); and delivery of both COVID-19 immunisation and routine immunisation compared with no involvement in vaccination programmes (aOR 2.42, 95% CI 1.06 to 5.52); poor treatment in the workplace (aOR 2.26, 95% CI 1.51 to 3.38) and lower confidence to respond to patient queries on COVID-19 immunisation (aOR 1.51, 95% CI 1.03 to 2.22). CONCLUSION: HCPs experienced service disruptions, trauma and burnout and implemented strategies to minimise disruptions to service delivery and improve patient experiences. Our study highlights the need to ensure that workforce resilience and strategies to protect and support HCPs are considered for pandemic planning, preparedness and management.


Assuntos
Esgotamento Profissional , COVID-19 , Pessoal de Saúde , Humanos , COVID-19/prevenção & controle , Indonésia , Feminino , Esgotamento Profissional/epidemiologia , Pessoal de Saúde/psicologia , Adulto , Masculino , Estudos Transversais , Serviços de Saúde Materno-Infantil , Pessoa de Meia-Idade , SARS-CoV-2 , Imunização , Pandemias
2.
J Adv Nurs ; 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38953531

RESUMO

AIM: To describe key features of a co-designed nurse-led model of care intended to improve access to early medication abortion and long-acting reversible contraception in rural Australian general practice. DESIGN: Co-design methodology informed by the Experience-Based Co-Design Framework. METHODS: Consumers, nurses, physicians and key women's health stakeholders participated in a co-design workshop focused on the patient journey in seeking contraception or abortion care. Data generated at the workshop were analysed using Braun and Clarkes' six-step process for thematic analysis. RESULTS: Fifty-two participants took part in the co-design workshop. Key recommendations regarding setting up the model included: raising awareness of the early medication abortion and contraceptive implant services, providing flexible booking options, ensuring appointment availability, providing training for reception staff and fostering good relationships with relevant local services. Recommendations for implementing the model were also identified, including the provision of accessible information, patient-approved communication processes that ensure privacy and safety, establishing roles and responsibilities, supporting consumer autonomy and having clear pathways for referrals and complications. CONCLUSION: Our approach to experience-based co-design ensured that consumer experiences, values and priorities, together with practitioner insights, were central to the development of a nurse-led model of care. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The co-designed nurse-led model of care for contraception and medication abortion is one strategy to increase access to these essential reproductive health services, particularly in rural areas, while providing an opportunity for nurses to work to their full scope of practice. IMPACT: Nurse-led care has gained global recognition as an effective strategy to promote equitable access to sexual and reproductive healthcare. Still, nurse-led contraception and abortion have yet to be implemented andevaluated in Australian general practice. This study will inform the model of care to be implemented and evaluated as part of the ORIENT trial to be completed in 2025. REPORTING METHOD: Reported in line with the Standards for Reporting Qualitative Research (SRQR) checklist. PATIENT OR PUBLIC CONTRIBUTION: Two consumer representatives contributed to the development of the co-design methodology as members of the ORIENT Intervention Advisory Group Governance Committee.

3.
Am J Hypertens ; 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38946082

RESUMO

BACKGROUND: Remote patient monitoring (RPM), which includes out-of-office blood pressure (BP) measurement, coupled with interventions including telehealth and team-based care, is recommended for hypertension (HTN) management. We aimed to assess participant experience with RPM for HTN (RPM-HTN) to understand barriers and facilitators to implementing RPM-HTN in a primary care population where health disparities and social inequities are prevalent. METHODS: This is a qualitative implementation study of participants' experiences with an RPM-HTN program for primary care patients with uncontrolled HTN at an academic health system. We recruited participants with high and low levels of engagement (≥16 or <16 days of transmitted BP readings per month). Semi-structured interviews were conducted, and descriptive statistics and rapid qualitative analysis were used to identify factors affecting the implementation of RPM-HTN, specifically adoption, acceptability, appropriateness, and feasibility. RESULTS: Multiple themes emerged from interviews with 14 participants. A doctor's recommendation and wanting help with BP management were facilitators for engagement, while work conflicts and forgetfulness were barriers to engagement. Participants enjoyed the format and content of nurse and clinical pharmacist phone calls and forming a relationship with the team; expressed improved understanding of HTN and BP management; and appreciated the convenience of remote monitoring. CONCLUSIONS: Participants found RPM-HTN acceptable and appropriate, highlighting the team-based and out-of-office approach to care. This study provides actionable targets to overcome feasibility barriers to implementation. In order to increase engagement, RPM policies and procedures should take into account barriers including the quantity of required BP measurements and mechanisms of telehealth communication.

4.
Am J Obstet Gynecol ; 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38969198

RESUMO

BACKGROUND: Limited evidence exists on the influence of hospital procedure volume, socioeconomic status, and comorbidities on surgical abortion outcomes. OBJECTIVE: Our study aimed to assess the association between hospital procedure volume, individual and neighborhood deprivation, comorbidities, and abortion-related adverse events. STUDY DESIGN: A nationwide population-based cohort study of all women hospitalized for surgical abortion was conducted from January 1, 2018, to December 31, 2019 in France. Annual hospital procedure volume was categorized into four levels based on spline function visualization: very low (<80), low ([80-300[), high ([300-650[), and very high-volume (≥650) centers. The primary outcome was the occurrence of at least one surgical-related adverse event, including hemorrhage, retained products of conception, genital tract and pelvic infection, transfusion, fistulas and neighboring lesions, local hematoma, failure of abortion, admission to an intensive care unit or death. These events were monitored during the index stay and during a subsequent hospitalization up to 90 days. The secondary outcome encompassed general adverse events not directly linked to surgery. RESULTS: Of the 112,842 hospital stays, 4,951 (4.39%) had surgical-related adverse events and 256 (0.23%) had general adverse events. The multivariate analysis showed a volume-outcome relationship, with lower rates of surgical-related adverse events in very high-volume (2.25%, aOR=0.34, 95%CI [0.29-0.39], p<0.001), high-volume (4.24%, aOR=0.61, 95%CI [0.55-0.69], p<0.001), and low-volume (4.69%, aOR=0.81, 95%CI [0.75-0.88], p<0.001) when compared to very low-volume centers (6.65%). Individual socioeconomic status (aOR=1.69, 95%CI [1.47-1.94], p<0.001), neighborhood deprivation (aOR=1.31, 95% CI [1.22-1.39], p<0.001), and comorbidities (aOR=1.79, 95%CI [1.35-2.38], p<0.001) were associated with surgical-related adverse events. Conversely, the multivariate analysis of general adverse events did not reveal any volume-outcome relationship. CONCLUSION: The presence of a volume-outcome relationship underscores the need for enhanced safety standards in low-volume centers to ensure equity in women's safety during surgical abortions. However, our findings also highlight the complexity of this safety concern which involves multiple other factors including socioeconomic status and comorbidities that policymakers must consider.

5.
Front Public Health ; 12: 1414361, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38962767

RESUMO

Introduction: Non-Hispanic Black (NHB) Americans have a higher incidence of colorectal cancer (CRC) and worse survival than non-Hispanic white (NHW) Americans, but the relative contributions of biological versus access to care remain poorly characterized. This study used two nationwide cohorts in different healthcare contexts to study health system effects on this disparity. Methods: We used data from the Surveillance, Epidemiology, and End Results (SEER) registry as well as the United States Veterans Health Administration (VA) to identify adults diagnosed with colorectal cancer between 2010 and 2020 who identified as non-Hispanic Black (NHB) or non-Hispanic white (NHW). Stratified survival analyses were performed using a primary endpoint of overall survival, and sensitivity analyses were performed using cancer-specific survival. Results: We identified 263,893 CRC patients in the SEER registry (36,662 (14%) NHB; 226,271 (86%) NHW) and 24,375 VA patients (4,860 (20%) NHB; 19,515 (80%) NHW). In the SEER registry, NHB patients had worse OS than NHW patients: median OS of 57 months (95% confidence interval (CI) 55-58) versus 72 months (95% CI 71-73) (hazard ratio (HR) 1.14, 95% CI 1.12-1.15, p = 0.001). In contrast, VA NHB median OS was 65 months (95% CI 62-69) versus NHW 69 months (95% CI 97-71) (HR 1.02, 95% CI 0.98-1.07, p = 0.375). There was significant interaction in the SEER registry between race and Medicare age eligibility (p < 0.001); NHB race had more effect in patients <65 years old (HR 1.44, 95% CI 1.39-1.49, p < 0.001) than in those ≥65 (HR 1.13, 95% CI 1.11-1.15, p < 0.001). In the VA, age stratification was not significant (p = 0.21). Discussion: Racial disparities in CRC survival in the general US population are significantly attenuated in Medicare-aged patients. This pattern is not present in the VA, suggesting that access to care may be an important component of racial disparities in this disease.


Assuntos
Negro ou Afro-Americano , Neoplasias Colorretais , Acessibilidade aos Serviços de Saúde , Disparidades em Assistência à Saúde , Programa de SEER , População Branca , Humanos , Neoplasias Colorretais/mortalidade , Neoplasias Colorretais/etnologia , Masculino , Feminino , Estados Unidos/epidemiologia , Idoso , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Pessoa de Meia-Idade , Disparidades em Assistência à Saúde/estatística & dados numéricos , Negro ou Afro-Americano/estatística & dados numéricos , População Branca/estatística & dados numéricos , Estudos de Coortes , Análise de Sobrevida , Idoso de 80 Anos ou mais , United States Department of Veterans Affairs/estatística & dados numéricos , Adulto
6.
Ann Intensive Care ; 14(1): 103, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38954149

RESUMO

BACKGROUND: Patients with advanced critical illness often receive more intensive treatment than they would choose for themselves, which contributes to high health care costs near the end of life. The purpose of this study was to determine whether a family support intervention delivered by the interprofessional ICU team decreases hospitalization costs and hospital readmissions among critically ill patients at high risk of death or severe functional impairment. RESULTS: We examined index hospitalization costs as well as post-discharge utilization of acute care hospitals, rehabilitation and skilled nursing facilities, and hospice services for the PARTNER trial, a multicenter, stepped-wedge, cluster randomized trial of an interprofessional ICU family support intervention. We determined patients' total controllable and direct variable costs using a computerized accounting system. We determined post-discharge resource utilization (as defined above) by structured telephone interview at 6-month follow-up. We used multiple variable regression modelling to compare outcomes between groups. Compared to usual care, the PARTNER intervention resulted in significantly lower total controllable costs (geometric mean: $26,529 vs $32,105; log-linear coefficient: - 0.30; 95% CI - 0.49, - 0.11) and direct variable costs ($3912 vs $6034; - 0.33; 95% CI - 0.56, - 0.10). A larger cost reduction occurred for decedents ($20,304 vs. $26,610; - 0.66; 95% CI - 1.01, - 0.31) compared to survivors ($31,353 vs. $35,015; - 0.15; 95% CI - 0.35,0.05). A lower proportion in the intervention arm were re-admitted to an acute care hospital (34.9% vs 45.1%; 0.66; 95% CI 0.56, 0.77) or skilled nursing facility (25.3% vs 31.6%; 0.63; 95% CI 0.47, 0.84). CONCLUSIONS: A family support intervention delivered by the interprofessional ICU team significantly decreased index hospitalization costs and readmission rates over 6-month follow-up. Trial registration Trial registration number: NCT01844492.

7.
J Gen Intern Med ; 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965201

RESUMO

BACKGROUND: Women are the fastest growing veteran group in the US and the number of women veterans (WVs) with cancer is rising; however, little is known about this population. Cancer care for WVs is complex and it is essential to understand their unique needs and care coordination challenges to provide evidence-based care. The purpose of this review is to map the quantity, distribution, and characteristics of literature describing cancer and its treatment among WVs. METHODS: We searched MEDLINE (via PubMed), Embase (Elsevier), and Web of Science Core Collection (Clarivate) from inception through January, 2024. Publications were eligible that reported gender-specific data on any aspect of cancer care among WVs. Data was abstracted by a single investigator with over-reading. RESULTS: Forty-six reports were included; 44 were observational and 19 had a women-only sample. There were no interventional reports and no qualitative reports had a patient sample. Breast cancer was the most commonly addressed (n = 19). There were six additional reports on sex-specific cancers. Many reports used large VA databases or previous trial data, creating the potential for patient overlap between reports. Among VA-specific areas of interest, only three reports evaluated the potential implications of racial differences and only two included a transgender population. No reports examined the effects of toxic exposures on cancer. Within the NCI Cancer Control Continuum, crosscutting areas were more commonly represented; over half (25) of the reports addressed epidemiology. There were few reports on focus areas and little overlap between focus and crosscutting areas. DISCUSSION: Existing literature provides an inadequate understanding of the population of WVs with cancer. There is scant information regarding the population of WVs with cancer, their care preferences or experiences, or how to best identify and address unmet healthcare needs. It is imperative to expand research to provide evidence-based care for this population.

8.
BMJ Open Qual ; 13(3)2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38960446

RESUMO

INTRODUCTION: Mental health disorders, particularly depression and anxiety, are widespread globally and necessitate effective solutions. The patient-centred approach has been identified as a viable and effective method for addressing these challenges. This paper synthesised the principles of patient-centred mental health services and provides a comprehensive review of the existing literature. MATERIALS AND METHODS: This is a qualitative content analysis study conducted in a systematic review framework in 2022. PubMed, Scopus, ProQuest and Cochrane databases were systematically searched, and by screening the titles, abstracts, and the texts of studies related to the purpose of the research, the data were extracted. Evaluation of the quality of the studies was done using the CASP checklist for qualitative studies. After selecting the final studies based on the entry and exit criteria, subsequently, a thematic analysis of findings was conducted on the data obtained from the systematic review. RESULTS: The database search produced 6649 references. After screening, 11 studies met the inclusion criteria. The quality scores indicated the studies were of high level of quality with acceptable risk of bias. The thematic analysis identified six major principles of patient-centredness in mental health services: education, involvement and cooperation, access, effectiveness and safety, health and well-being, and ethics. CONCLUSIONS: Patient-centredness is a complex approach in mental health services. The principles and elements of patient-centredness foster positive patient outcomes, enhance healthcare quality and ensure compassionate and effective care. Upholding these principles is crucial for delivering patient-centred, ethical and effective mental health services. Furthermore, the study found that patient education can boost adherence and satisfaction, and decrease unnecessary hospitalisations. Patient involvement in decision-making is influenced by their age and the relationship with their psychologists. And, effective leadership and resource management can enhance clinical processes and patient-centredness in mental health services.


Assuntos
Serviços de Saúde Mental , Assistência Centrada no Paciente , Humanos , Assistência Centrada no Paciente/normas , Pesquisa Qualitativa , Transtornos Mentais/terapia
9.
BMC Public Health ; 24(1): 1798, 2024 Jul 05.
Artigo em Inglês | MEDLINE | ID: mdl-38970000

RESUMO

BACKGROUND: A previous study reported significant excess mortality among non-COVID-19 patients due to disrupted surgical care caused by resource prioritization for COVID-19 cases in France. The primary objective was to investigate if a similar impact occurred for medical conditions and determine the effect of hospital saturation on non-COVID-19 hospital mortality during the first year of the pandemic in France. METHODS: We conducted a nationwide population-based cohort study including all adult patients hospitalized for non-COVID-19 acute medical conditions in France between March 1, 2020 and 31 May, 2020 (1st wave) and September 1, 2020 and December 31, 2020 (2nd wave). Hospital saturation was categorized into four levels based on weekly bed occupancy for COVID-19: no saturation (< 5%), low saturation (> 5% and ≤ 15%), moderate saturation (> 15% and ≤ 30%), and high saturation (> 30%). Multivariate generalized linear model analyzed the association between hospital saturation and mortality with adjustment for age, sex, COVID-19 wave, Charlson Comorbidity Index, case-mix, source of hospital admission, ICU admission, category of hospital and region of residence. RESULTS: A total of 2,264,871 adult patients were hospitalized for acute medical conditions. In the multivariate analysis, the hospital mortality was significantly higher in low saturated hospitals (adjusted Odds Ratio/aOR = 1.05, 95% CI [1.34-1.07], P < .001), moderate saturated hospitals (aOR = 1.12, 95% CI [1.09-1.14], P < .001), and highly saturated hospitals (aOR = 1.25, 95% CI [1.21-1.30], P < .001) compared to non-saturated hospitals. The proportion of deaths outside ICU was higher in highly saturated hospitals (87%) compared to non-, low- or moderate saturated hospitals (81-84%). The negative impact of hospital saturation on mortality was more pronounced in patients older than 65 years, those with fewer comorbidities (Charlson 1-2 and 3 vs. 0), patients with cancer, nervous and mental diseases, those admitted from home or through the emergency room (compared to transfers from other hospital wards), and those not admitted to the intensive care unit. CONCLUSIONS: Our study reveals a noteworthy "dose-effect" relationship: as hospital saturation intensifies, the non-COVID-19 hospital mortality risk also increases. These results raise concerns regarding hospitals' resilience and patient safety, underscoring the importance of identifying targeted strategies to enhance resilience for the future, particularly for high-risk patients.


Assuntos
COVID-19 , Mortalidade Hospitalar , Pandemias , Humanos , França/epidemiologia , Feminino , Masculino , Mortalidade Hospitalar/tendências , COVID-19/mortalidade , COVID-19/epidemiologia , Idoso , Pessoa de Meia-Idade , Estudos de Coortes , Adulto , Idoso de 80 Anos ou mais , Ocupação de Leitos/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Hospitais/estatística & dados numéricos , SARS-CoV-2
11.
Int J Integr Care ; 24(3): 5, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38974205

RESUMO

Introduction: Integrated care has been posited as a potential solution to the global burden of youth mental health (YMH), but there is limited evidence on how best to design, staff, and evaluate different integrated care models. Our review aimed to consolidate the evidence on integrated models of mental healthcare for young people, to identify the core components of integration, and create a framework that can be used to analyse levels of YMH integration. Methods: We conducted a systematic review of literature across PubMed, SCOPUS, and PsycINFO databases and the grey literature We performed a narrative synthesis extracting core components of integrated YMH care. Results: Inductive themes from the literature described core components of integrated care. These themes were mapped into a novel framework combining the World Health Organisation health system building blocks and six intensity levels of integrated care to consider how best to implement and sustain integrated care within the YMH system. Discussion: The Youth Integration Project framework can form a basis for the development, implementation and evaluation of well-articulated models of youth integrated mental health pathways, assisting services identify what operational changes are needed to best implement and sustain integrated care.

12.
Artigo em Inglês | MEDLINE | ID: mdl-38951248

RESUMO

Post-2000, the prevalence of cannabis consumption has been rising internationally. This paper investigates whether cannabis-related treatment demand in German outpatient addiction care facilities (OACFs) has been following this trend. Treatment demand related to cannabis use disorder (CUD) for the period 2001 to 2021 was investigated using data from the nation-wide standardized German Addiction Care Statistical Service. Analyses covered all and first-time treatment admissions, demographics, and treatment outcomes. We identified years with significant changes in slope or direction of trends through joinpoint regression. Trends within the CUD client population were contrasted with trends among the entire OACF client population. CUD is the second-most common cause for OACF admissions in Germany. Between 2001 and 2021, the share of CUD-related cases among total OACF caseload increased from 7.1 to 19.9%, whereby the share of first-time treatment admissions declined from 79.6 to 55.6%. The share of CUD client population > 35 years almost tripled from 6.0 to 17.4%, that of female client population rose from 15.6 to 18.1%. From 2001 to 2007, the share of CUD-related treatments completed with improved symptomatology increased from 54.7 to 65.6%, followed by a marginal decline. CUD-related treatment demand is growing in Germany's OACFs, involving a client population that is increasingly older and more experienced with the addiction care system. As current intervention programmes mainly target adolescents and young adults who have been consuming cannabis only for a short time, adapting service offers to the changing client profiles appears paramount to improve treatment effectiveness.

13.
Inflamm Bowel Dis ; 2024 Jun 29.
Artigo em Inglês | MEDLINE | ID: mdl-38944765

RESUMO

BACKGROUND: The patient perspective is essential for assessing disease severity, but it is not always adequately considered. We describe how a comprehensive clinical disease severity index (DSI) for inflammatory bowel disease (IBD) correlates with patient global self-assessment (PGSA). METHODS: In an individually linked parallel online survey, physicians provided the DSI, and patients provided self-assessed severity using a global question and visual analog scale (0-100) (PGSA). Mean DSI values by PGSA were calculated with 95% confidence intervals. Pearson correlation (r) and the intraclass correlation coefficient were calculated for PGSA vs DSI. Positive predictive values for identifying severe disease with PGSA categories as a reference were based on a threshold >22 points. RESULTS: The primary analysis included 89 pairs (46 Crohn's disease [CD], 43 ulcerative colitis [UC]) with strict criteria and 147 pairs when less stringent. Common reasons for exclusion were missing values for albumin or colonoscopy. Mean DSI values showed no clear trend with increasing PGSA in CD but good discrimination between moderate, severe, and very severe PGSA in UC. For PGSA on the visual analog scale, r was 0.54 for CD and 0.59 for UC (difference in means: CD 27.7, UC 13.8; intraclass correlation coefficient: CD 0.48, UC 0.58). A high DSI predicted severe disease in 76.2% of CD and 65.2% of UC. CONCLUSIONS: The DSI showed good discrimination for patient-reported disease severity in UC but performed unsatisfactorily in CD. Correlations were moderate. Further refinement of the DSI is suggested to better reflect the patient perspective.


The performance of an inflammatory bowel disease severity score was compared with self-perceived severity based on an individually linked online survey of patients and their physicians. Agreement and prediction of severe disease were moderate and should be improved by integrating the patients' perspective.

14.
BMC Palliat Care ; 23(1): 159, 2024 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-38918771

RESUMO

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Estudos Transversais , Inglaterra , Masculino , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/normas , Assistência Terminal/psicologia , Feminino , Adulto , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Pesquisadores/psicologia , Pesquisa Qualitativa
16.
Ann Rheum Dis ; 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38876509

RESUMO

BACKGROUND: Since the publication of the 2011 European Alliance of Associations for Rheumatology (EULAR) recommendations for patient research partner (PRP) involvement in rheumatology research, the role of PRPs has evolved considerably. Therefore, an update of the 2011 recommendations was deemed necessary. METHODS: In accordance with the EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 PRPs was convened. The process included an online task force meeting, a systematic literature review and an in-person second task force meeting to formulate overarching principles (OAPs) and recommendations. The level of agreement of task force members was assessed anonymously (0-10 scale). RESULTS: The task force developed five new OAPs, updated seven existing recommendations and formulated three new recommendations. The OAPs address the definition of a PRP, the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. The recommendations address the research type and phases of PRP involvement, the recommended number of PRPs per project, the support necessary for PRPs, training of PRPs and acknowledgement of PRP contributions. New recommendations concern the benefits of support and guidance for researchers, the need for regular evaluation of the patient-researcher collaboration and the role of a designated coordinator to facilitate collaboration. Agreements within the task force were high and ranged between 9.16 and 9.96. CONCLUSION: The updated EULAR recommendations for PRP involvement are more substantially based on evidence. Together with added OAPs, they should serve as a guide for researchers and PRPs and will ultimately strengthen the involvement of PRPs in rheumatology research.

18.
BMJ Paediatr Open ; 8(1)2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38942589

RESUMO

BACKGROUND: Limited evidence exists regarding children receiving home healthcare devices (HHDs). This study aimed to describe the range and type of HHD use by children with chronic medical conditions in Japan and explore factors leading to increased use of these devices. METHODS: This retrospective cohort study was conducted using data from the National Database of Health Insurance Claims and Specific Health Checkups of Japan. Children receiving HHD aged ≤18 years between April 2011 and March 2019 were included. Children newly administered HHD between 2011 and 2013 were followed up for 5 years, and logistic regression analysis was performed to assess the relationship between increased HHD use and each selected risk factor (comorbidity or types of HHD). The models were adjusted for age category at home device introduction, sex and region. RESULTS: Overall, 52 375 children receiving HHD were identified. The number (proportion) of children receiving HHD increased during the study period (11 556 [0.05%] in 2010 and 25 593 [0.13%] in 2018). The most commonly administered HHD was oxygen (51.0% in 2018). Among the 12 205 children receiving HHD followed up for 5 years, 70.4% and 68.3% who used oxygen or continuous positive airway pressure, respectively, were released from the devices, while only 25.8% who used mechanical ventilation were released from the device. The following diagnosis/comorbidities were associated with increased HHD use: other neurological diseases (OR): 2.85, 95% CI): 2.54-3.19), cerebral palsy (OR: 2.16, 95% CI: 1.87 to 2.49), congenital malformations of the nervous system (OR: 1.70, 95% CI: 1.34 to 2.13) and low birth weight (OR: 1.68, 95% CI: 1.41 to 2.00). CONCLUSIONS: This study provides nationwide population-based empirical data to clarify the detailed information regarding children receiving HHD in Japan. This information could assist healthcare professionals in improving the quality of life of these children and their families and help health policymakers consider measures.


Assuntos
Serviços de Assistência Domiciliar , Humanos , Japão/epidemiologia , Estudos Retrospectivos , Feminino , Masculino , Criança , Serviços de Assistência Domiciliar/estatística & dados numéricos , Pré-Escolar , Lactente , Adolescente , Doença Crônica/epidemiologia , Recém-Nascido
19.
BMJ Paediatr Open ; 8(1)2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38942587

RESUMO

BACKGROUND: Raised intracranial pressure (ICP) contributes to approximately 20% of the admissions in the paediatric intensive care unit (PICU) in our setting. Timely identification and treatment of raised ICP is important to prevent brain herniation and death in such cases. The objective of this study was to examine the role of optic nerve sheath diameter (ONSD) in detecting clinically relevant raised ICP in children. METHODS: A hospital-based observational analytical study in a PICU of a tertiary care institute in India on children aged 2-14 years. ONSD was measured in all children on three time points that is, day 1, day 2 and between day 4 and 7 of admission. ONSD values were compared between children with and without clinical signs of raised ICP. RESULTS: Out of 137 paediatric patients recruited, 34 had signs of raised ICP. Mean ONSD on day 1 was higher in children with signs of raised ICP (4.99±0.57 vs 4.06±0.40; p<0.01). Mean ONSD on day 2 also was higher in raised ICP patients (4.94±0.55 vs 4.04±0.40; p<0.01). The third reading between days 4 and 7 of admission was less than the first 2 values but still higher in raised ICP patients (4.48±1.26 vs 3.99±0.57; p<0.001). The cut-off ONSD value for detecting raised ICP was 4.46 mm on the ROC curve with an area under curve 0.906 (95% CI 0.844 to 0.968), 85.3% sensitivity and 86.4% specificity. There was no difference in ONSD between the right and the left eyes at any time point irrespective of signs of raised ICP. CONCLUSION: We found that measurement of ONSD by transorbital ultrasound was able to detect clinically relevant raised ICP with an excellent discriminatory performance at the cut-off value of 4.46 mm.


Assuntos
Hipertensão Intracraniana , Nervo Óptico , Humanos , Criança , Nervo Óptico/diagnóstico por imagem , Nervo Óptico/patologia , Hipertensão Intracraniana/diagnóstico , Hipertensão Intracraniana/diagnóstico por imagem , Pré-Escolar , Feminino , Masculino , Adolescente , Unidades de Terapia Intensiva Pediátrica , Índia , Ultrassonografia/métodos , Pressão Intracraniana/fisiologia , Curva ROC , Sensibilidade e Especificidade
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